Author
Topic: Epilepsy (Read 1971 times)

I was diagnosed with a seizure disorder/epilepsy when I was 16, im 32 now. I just recently got through a really horrible 2 years of having roughly 3-4 a day on a good day. Thankfully I've now gone almost 3 months w/o having one.

I take a lot of medications, but the 1 that I'm the most scared of not being able to get is my anti-epileptic.

Does anyone else have this worry? Does anyone have any ideas on what I could do in case of an emergency where I wasn't able to get my meds?

Most certainly. But like you, I'm not coming up with any easy solutions.

One thing we've considered is only taking 3 pills out of a 4 pill a day dosage and refilling the script like normal. In a little over a year you end up with about 3 months worth in reserve. However, cutting one pill out of four is a 25% reduction and ups the chance of a seizure. Since my wife's seizures, when they happen, are pretty nasty fall on the floor and flop like a fish type deals that take days to recover from, the idea of risking even one is well.... less than appealing.

Get your doc to up your dosage, then save the extra?

I don't know. Like you I'm hoping there's somebody who better understands the ins and outs of the medical community who could offer a better solution.

One thing we've considered is only taking 3 pills out of a 4 pill a day dosage and refilling the script like normal.

Scripts go by date so this doesn't work. If you try to get a refill early you'll be asked why & probably won't get the refill. You might if you say you accidentally dropped the pill bottle in the sink with the water running, but that would work only once.

With the recent 'Sandy' event, and other natural catastrophes, why not just ask the doctor to give you an extra three months supply to have on hand, and rotate them.

If you have a good relationship with the doctor he may actually facilitate that.I had one doctor who told me to contact him when I thought I needed a new blood test (I have a mild blood disorder). He was also willing to give me a set of small prescriptions including morphine, for a wilderness adventure I had planned. I didn’t go, so I never took him up on it.

It the period of trouble is extended long enough, you will run out of most of your prescription meds, no matter what strategy you are using.

There are some potential natural remedies and palliatives for many diseases. A novel notion for epileptics is the ketogenic - or very low carb - diet. Essentially protein and fat, is would mimic the natural diet of Aleuts, for instance, and in a TEOTWAWKI situation, could be sustained by hunting or raising meat animals.

The ketogenic diet is a special high-fat, low-carbohydrate diet that helps to control seizures in some people with epilepsy. It is prescribed by a physician and carefully monitored by a dietitian. It is more strict, with calorie, fluid, and protein measurement and occasional restriction than the modified Atkins diet, which is also used today.

The name ketogenic means that it produces ketones in the body (keto = ketone, genic = producing). Ketones are formed when the body uses fat for its source of energy. Usually the body usually uses carbohydrates (such as sugar, bread, pasta) for its fuel, but because the ketogenic diet is very low in carbohydrates, fats become the primary fuel instead. Ketones are not dangerous. They can be detected in the urine, blood, and breath. Ketones are one of the more likely mechanisms of action of the diet; with higher ketone levels often leading to improved seizure control. However, there are many other theories for why the diet will work.

Who will it help?

Doctors usually recommend the ketogenic diet for children whose seizures have not responded to several different seizure medicines. It is particularly recommended for children with the Lennox-Gastaut syndrome.

Doctors seldom recommend the ketogenic diet for adults. However, in the limited studies that have been done, the diet seems to work just as well, although it is very restrictive for most adults. Studies are underway to evaluate the modified Atkins diet in this population.

The ketogenic diet has been shown in case reports and case series to be particularly effective for some epilepsy conditions. These include infantile spasms, Rett syndrome, tuberous sclerosis complex, Dravet syndrome, Doose syndrome, and GLUT-1 deficiency. Using a formula-only ketogenic diet for infants and gastrostomy-tube fed children may lead to better compliance and possibly even improved efficacy. The diet works well for children with focal seizures, but may be less likely to lead to an immediate seizure-free result. In general, the diet can always be considered as long as there are no clear metabolic or mitochondrial reasons not to use it.

Scripts go by date so this doesn't work. If you try to get a refill early you'll be asked why & probably won't get the refill. You might if you say you accidentally dropped the pill bottle in the sink with the water running, but that would work only once.

Bonnie: Not to be argumentative, but, of course it would work. If you only take 3 of the 4 pills you are prescribed and save the fourth one in your old peanut butter jar, your pill bottle will be empty at exactly the same time as it normally would. If you are getting refills say every 30 days you would have 30 pills, 7 1/2 days worth, stashed away every month.

The debate isn't whether it would work with the pharmacist. It is whether it is worth risking a seizure to do it.

I do agree that if your doc would facilitate an extra script to have on hand and rotate through, that would certainly be the best way to go.

Thanks Bill for the info on the low carb diet. I've been reading seizure stuff for 6 years and never stumbled onto that. It's certainly something to keep in mind if the S does ever HTF. It might give a guy a fighting chance.

Old Guy....I know it works....this is what I have had to resort to for my diabetes and thyroid meds...I then rotate them so that I am using up the older ones first.

As for my husband...he is on medication that is so controlled, plus he can NOT go without it.....I'm going to try to talk to his doctor when he goes in this month about getting some extra.

Oh, by the way...Obamacare is going through whether we like it or not....we got notice from our doctor that our insurance company will not longer pay for his antiseizure med. and my mother got a notice that her insurance will no longer pay for her diabetes strips! I guess since they are both over 50, they are dispensable.

The debate isn't whether it would work with the pharmacist. It is whether it is worth risking a seizure to do it.

If you don't need the pills it works. I need to take all the pills that I am prescribed - tho if I ate better I wouldn't. My diet has improved a lot in the last couple of years, but I've still got a ways to go. I've gotten into the habit of asking myself what I'd do if certain comfort foods were impossible to buy & that helps me reduce & eventually eliminate them. I don't like the idea of needing to suddenly go off them in the middle of a stressful situation.

I did save up pain pills in the past. I've still got some stashed for "just in case." One of these days I'm going to have to look up how long they are good for.

Bottom line on this, I guess, is: Is is better to endure some small(er) discomfort now to make it less likely that a very serious possibly life threatening discomfort is guaranteed should the system fall apart even for a short time?

All this is assuming of course that your doc can see the system falling apart around him too and the need to have some extra on hand.

Quote

Oh, by the way...Obamacare is going through whether we like it or not

Egg, didn't you mean to say Obamadon'tcare?

Fortunately or not, depending on how one looks at it, we already pay cash for my wife's meds. Other than all this "free" medical care is likely to drive the price up, or worst case, cause shortages which is the whole point of this discussion, I don't have to worry about the insurance company dropping our meds because we stepped off that wagon a while back.

Well I've seen first hand what happens when she don't get her meds . Whats sad to say is that IMO that most doctors really don't care about your health or well being. They are all about giving meds and passing you on to the next doc on down the line. I, for one, have been to the doctor recently. He didn't even look to much at me before sending me off to a specialist. Then the specialist sent me to yet another specialist. See the pattern here? I think the only real way to fix this is to educate myself and do what I can, only having to go to the doctor in an emergency.

Well I've seen first hand what happens when she don't get her meds . Whats sad to say is that IMO that most doctors really don't care about your health or well being. They are all about giving meds and passing you on to the next doc on down the line. I, for one, have been to the doctor recently. He didn't even look to much at me before sending me off to a specialist. Then the specialist sent me to yet another specialist. See the pattern here? I think the only real way to fix this is to educate myself and do what I can, only having to go to the doctor in an emergency.

Yep, he's caught me countless times & picked me up out of the floor when he couldn't catch me in time. I have pretty bad seizures when I do have them.

Thank you everyone for all of the tips. I've actually asked for samples of meds to have on hand but most of my doctors don't have them on hand anymore. I will do some more research on the diet. I've read a little bit about it before but not much. My memory sucks so what I've read I've already forgotten lol.